Saturday, October 18, 2008

Read Only With Parental Supervision







We finished our three rounds of chemo today. I am at home and trying to get a little sleep tonight and my husband is sleeping at the hospital with our baby. I spent the last two nights at the hospital and finally decided I needed a break from everything and a chance to get a little sleep (I think I will be more effective at the hospital and at home with my other kids if I have a few hours of sleep under my belt). Day one of Chemo. My daughter was given an anti nausea drug (Anzemet). We noticed that our little girl was very sleep during all three treatments. Following her treatments our night nurse was getting ready to give her an anti nausea buffer drug (ativan) when it all began. She threw up about every 15 minutes for 3 hours. Now in case you never thought this through (and I hadn't) the chemo drugs are basically poison. When it is removed from her system either by throwing up or urinating you cannot touch it with your bare skin..... So, her first throw up went all over her dad and the floor and her. We (meaning the nurse and I) had to get gloves on and get her clothing removed and then her dad and I gave her a bath (and no not a regular bath because, with a broviac line you cannot get the dressing that covers the tube and entry site wet) with no rinse cleansing sponges that the hospital had. Once we bathed her twice we then redressed her and the nurse cleaned the floor up (I tried to help, but he told me that I needed to let him do it because there are certain precautions that you must take to clean up chemo meds) and my husband had to change into a lovely pair of hospital sweats and a t-shirt that were brought up to our room. He also had to clean his skin twice. Once everything was cleaned up all of the laundry was taken out of the room and washed not once, but yes, twice. After three hours of our sweet little girl throwing up we were able to get some of the anti nausea medicine into her system to help out. They gave her the ativan and benadryl. We were hoping that she would get really sleepy but with our luck the benadryl did not make her sleepy, it made her very angry, and irritated and hyper. She was yelling and screaming, throwing things and hitting us. Our little one has always been a very mellow happy baby so to see this was very different than anything we were used to. I described it as: she would do the alligator death roll almost continuously with the screaming, throwing things and hitting us. It was to say at the very least, insane! While all of the chemo meds were being given she developed a fever (which the dr.'s don't think was related to the chemotherapy) Her fever gradually got higher and higher through out the night until it peaked at 103.3, when her fever finally broke she was soaked her hair and body looked like she had gotten out of the tub. Luckily we had her sleeping on a blue absorbent pad that kept the bedding dry so that we didn't have to change the sheets. Oh, I forgot to mention, but since you don't want chemo on your skin we had to wake her up every two hours and change her diaper, wiping it twice and then apply a barrier cream/diaper rash cream to her bottom. Once in the middle of the night she woke up and was wide awake screaming and hitting us again. I finally told her dad I had had enough and he offered to take her. He said that it took him an hour of bouncing and walking to get her back to sleep. Day two of chemo: We woke up early and very tired only to find that our baby was still very agitated. We tried to feed her several times to no avail. She must have lost her appetite (the cisplatin makes you have a metallic taste in your mouth) I don't know if it was still effecting her or if she just didn't feel hungry because she had a continuous IV in her. She was still very inconsolable and acted very tired from the time she woke up until 1:00pm when she finally cried herself to sleep in her dad's arms. We had both tried so hard to calm her and I was at a loss for what to do with her so I finally just fell to the ground on my knees and prayed. I prayed and cried until she finally fell asleep. There is really something wrong with putting something in your body that makes you so sick in so many different ways just to be healed. I pray that someone will find a better way to cure cancer!!!!!! After she fell asleep I fell asleep and her dad enjoyed the peace and quiet. She woke up feeling much better we even got a small smile or two out of her. Her second round of chemo the nurses began with a different anti nausea drug called Zofran. Then they followed it up with a smaller dose of benadryl and a full dose of ativan. What a huge difference that made. She was still agitated, but not to the extent that she was the night before. She even slept almost all night long (of course we still had to change her diaper and take vitals, but she would fall right back to sleep). It was such a nice break. Day 3 Chemo: We decided to cut the benadryl out completely. It seems to have done the trick with the agitation. She still had some of the irritation, but I would be irritated to if I had been stuck in the hospital for three days and was hooked up to a machine and etc, etc. etc. Over all the chemo was not to terrible today. The down falls today were that her hematicrit levels are low and they will need to do a blood transfusion and the outer portion of her broviac tube broke and they will need to use a repair kit to fix it. I will have to write another blog about how that all went. I am allowed to be really upset and say that this SUCKS. This is not right for anyone to have to go through. I got a really good cry out with my sister in-law and we just bawled and bawled together and I am feeling much better about things. I think that I can go back up tomorrow morning and be the supportive and loving mother that my baby needs me to be. (I found myself at times today where I felt very sick to my stomach and very weak and also very light headed and dizzy) I decide it was time for me to finally take a break from it all, my husband is such a wonderful husband that is willing to carry the load himself for awhile and I can't tell him what a blessing that is. I don't think you can go through something like this and not get a break you will be spent way to early in the game. I think that I will not be so descriptive in my next blogs about her treatments, but will be more informative and short. It seems to be very draining to relive it all over again in my thoughts. This is one of the most (if not the most) difficult things that I have ever had to do in my life. And, We are just getting started..................................

9 comments:

Emily said...

My heart aches for you. I am so with you, someone has got to find a better way to treat and hopefully a way to cure or prevent cancer. I watched my grandpa go through it and I hated it. I can't even imagine watching my child like you are.

Chemo just sounds horrid. We are thinking and praying for you guys.

Emily

The Johnsons said...

I'm so sorry. Just reading that makes me cry. Chemo is horrible, trying to kill off the cancer, but not the patient. As many years as cancer has been around, it seems insane they couldn't have come up with a better method yet.

I'm glad all 3 nights were not as bad as the first one. I can't imagine doing that every time. It's just not fair that kids have to go through something like this, they should be exempt from that kind of misery.

We love you, and pray for your continued strength, and Alyssa's healing.

Angela Baird said...

What a crazy several days for you. I have been crying for you and your experiences as I have read this, and am so sad that anyone has to go through this, especially one so little! You guys are doing a great job, all things considered! Sleeping at hospitals is the worst! We will be in touch...

The Nelson's said...

Hey guys,
Just wanted to let you know we are thinking of you and keeping you in our prayers. Today in church all I could do was think of you guys during the Relief Society lesson. It was the Joseph Smith lesson #19. If you haven't read it yet, you should. It's great. If you guys need anything at all let us know, we are here for you. We're not too far from the hospital, so if you need us to watch any of the kids let us know. As stressful and hard as things are, I'm glad you are writing the blog. I'm sure it makes things easier for you not to have to tell a bunch of people over and over. I'm glad to see that you are giving yourself a break (if you can call it that).Take care and don't hesitate to call.
Tom and JaNean

Memmott Family said...

Mike and sarah
We will keep you in our prayers. I am so glad that you are writing a detailed blog, and its ok to be descriptive, becaue then you can go back and read it later on.. and a journal for her..

Best wishes go out to you. If we can do anything from here let us know. Send your kids if you need to!!
liz

Tara said...

I am so sorry this is how it all went for you. I pray that they get just the right cocktail figured out for little Alyssa's body and all will be smooth the next time. PLEASE let us know what we can do to help, especially when the crew comes home. We love you and are praying for you day and night. You are in good hands up there at Primary's.

Marisa said...

I just heard from my husband Jon who works with Mike (we've met at a few ARB functions). He mentioned the blog. I'm so sad for what you and your baby girl are going through. No parent should have to watch a child suffer like that, but unfortunately it happens. We will remember your family in our prayers and hope that all will be well in time.

Marisa Schwartz

Janae B said...

After your folks have gone we are ready to pitch in and help. It isn't fair that life can change so fast. We continually keep you in our prayers.

Angie said...

My mom went through chemo due to breast cancer and they gave her a popcicle before every treatment, to get rid of that metal taste in her mouth. The good thing about the popcicle is that it didn't kill all of her taste buds either. You're whole family is in our prayers. I watched both my mom and mother in law go through cancer. CANCER SUCKS! But they are in remission now. We pray for the same results for your family.

MIke and Angie Kelly